Table 3.

Top 10 research uncertainties

Research Uncertainty	Source,a Themes, and Uncertainties Encompassed
1. What is the best way to enhance communication between health care professionals and patients and to maximize patient participation in decision making with regard to the advantages and disadvantages of different forms of dialysis, and access to test results to facilitate self-management?	Source: Mostly patients, but also some health professionals and caregivers
	Themes
	Inform decision making about dialysis treatment options
	Need for improved communication among all parties (doctors, nurses, patients, etc.)
	Potential for patients to be more engaged in their own care (e.g., by means of having access to test results, information about blood-work and effects of medications)
	Having access to information about others’ experiences (and what the pros/cons were) in the context of decision making
	Combined the following uncertainties:
	“What is the best way of informing patients with kidney failure about the advantages and disadvantages of different forms of dialysis; and how can we ensure that people get the right information, at the right time, and in the right way to ensure informed decision-making?”
	“How can communication between patients with kidney failure and health care providers be improved, and does enhanced communication (including providing test results) increase patients’ ability to participate in the management of their condition?”
2. How do different dialysis modalities compare in terms of their effect on quality of life, mortality, and patient acceptability, and are there specific patient factors that make one modality better for some patients with kidney failure than others?	Source: Noted by a similar proportion of patients and health professionals, and some caregivers
	Themes
	Uncertainties by health professionals were mostly related to comparison of dialysis modalities (PD versus HD, nocturnal HD versus short/frequent HD, home versus hospital HD) in terms of quality of life and mortality
	Many patients submitted uncertainties about determining the optimal length of time and frequency of HD for individual patients, and their impact on outcomes, with the potential that patients’ quality of life could be improved with shorter HD sessions
	This question was combined with a second uncertainty noted within the top 30:
	“How can hemodialysis be tailored to a patient [in terms of: length, frequency, location and schedule (e.g. day/nighttime)] to enhance effectiveness and quality of life?”
3. What are the causes and effective treatment(s) of, and ways to prevent, itching in dialysis patients?	Source: Mostly patients
	Themes
	Causes of itchy skin
	Best treatment for itching
	Availability of improved treatments
4. What is the best strategy to increase kidney transplantation, including access to transplantation, increasing the efficiency of the recipient workup, and increasing the availability of donor kidneys?	Source: Mostly health professionals, but also some patients and care providers
	Themes
	Improving access to donor kidneys and transplantation
	How transplantation workup could be more efficient
5. What is the psychological and social impact of kidney failure on patients, their family, and other caregivers, and can this be reduced?	Source: Mostly health professionals, but also by patients
	Themes
	Impact of dialysis on caregivers (particularly in the case of home dialysis patients)
	Impact of dialysis on patients and the family unit and close friends
	Potential interventions to reduce the burden of dialysis
6. What are the best ways to promote heart health in dialysis patients, including management of BP?	Source: Noted by a similar proportion of patients and health professionals
	Themes
	Identification of treatments that would reduce the effect of heart disease in people with kidney failure receiving dialysis
	Identification of appropriate BP target(s) for dialysis patients
	Management of elevated BP
	Concern about damage to organs and arteries if BP is not controlled properly
7. For people with kidney failure, what is the effect of each of the dietary restrictions (sodium, potassium, phosphate) separately, and when taken in combination, on important outcomes, including quality of life?	Source: Mostly patients, but also health professionals and some caregivers
	Themes
	Benefits associated with strict dietary restriction
	Whether adherence to a renal diet improves health outcome(s) in dialysis patients
	Whether dietary restrictions could be relaxed in some way because they have a significant effect on quality of life
8. What are the best ways to manage symptoms in people receiving or nearing dialysis, including poor energy, nausea, cramping, and restless legs?	Source: Mostly patients, some health professionals and a few care providers
	Themes
	Complications that arise with dialysis treatment (e.g., headaches, nausea, cramping, and poor energy) and how to effectively treat them
	Optimal method to determine the amount of fluid to remove, so as to prevent low BP and fatigue
	Combined
	“What are the causes and effective treatment(s) of poor energy in dialysis patients?”
	“What are the best ways to manage or prevent complications that occur during or shortly after the hemodialysis treatment itself (i.e. low blood pressure, cramping, nausea, headaches)?”
	“What are the causes and effective treatment(s) of, and ways to prevent, cramping in dialysis patients?”
9. What are the causes and effective treatment(s) of depression in dialysis patients?	Source: Noted by a similar proportion of patients and health professionals
	Themes
	Emotional effect of dialysis on the patient
	How to manage mood changes and depression, and what may be responsible for depression (i.e., the adverse effects of medications or other treatments, or kidney disease itself)
10. What is the best vascular access (among both new and existing types of access) for people receiving hemodialysis?	Source: Mostly health professionals, although some patients and care providers
	Themes
	Identification of the best vascular access options across different patient types
	How the access should be placed and by whom, and how it should be managed
	Which access option offers patients the best quality of life, which one lasts the longest, and which one has the fewest complications
	Potential for less invasive methods of access in the near future

PD, peritoneal dialysis; HD, hemodialysis.

^a“Source” refers to the group that noted the uncertainty within the survey.